August 1 Last Year 2008

Friday August 1 2008

Lydia went to daycare all day - they were having a PJ party so she was quite happy to go.

Henry and I were home with Harry - today he started throwing up a black, yucky bile - sticky, smelly, awful stuff.

Good news - his bilirubin count was slightly down from Monday from 320 -> 306 - not huge but a glimmer that something is moving. But all day he could not keep anything down and even was vomiting up breast milk as soon almost as he nursed.

A very hard day - and nights are increasingly hard - Harry is so restless and really can't sleep much at all.

Lydia's beautiful thing was the PJ party at daycare.

Mine was Toni helping out with laundry and just dropping by to say hello and see how we're doing. It is such a huge help.

Henry's was chatting with Peter and Paula and getting the news about the bilirubin counts going down.

Saturday August 1 2009

This weekend is such a weekend of huge energy of change for my family. Exactly 4 years ago, 1 August 2005, my Mum's house burnt down - my childhood home. The very next day 2 August 2005, Henry, Lydia and I moved into our first house - our current house on Ruby Street. And of course, 3 August 2008 is Harry's Angel Day.

Harry got so sick so quickly. It happened so fast we both couldn't possibly see and comprehend what was happening. On July 18th we received the news that his chemo was no longer working and there was nothing more the oncologists could do for him. But at that time even they thought he might have months left to live. We certainly were not willing to just give up, simply because *they* had exhausted their allopathic options.

We were trying everything we could think of - intense Reiki, intense naturopathy, intense energy field work, prayer, prayer and more prayer, meditation, intense vitamin therapy. We would have tried anything for Harry, as long as it wouldn't have hurt him. We had just started working with a naturopathic doctor from New Mexico, who has successfully treated many rare and 'hopeless' cancer cases. She had sent us an intense liver detox for Harry. Her analysis had found that Harry was suffering from a toxic levels of heavy metals and estrogen. Around July 22 or 23 we had started him on a detox for this, for which he took about 10 different liquid medicines each day. Some of these we could give to him directly in his mouth by eye dropper. And after the first few days of getting used to it, he would open up so nicely to take the medicine.

The difficult thing, and I have read about other cancer patients who had a similar experience, it is nearly impossible to distinguish a successful detox from a worsening health situation. That is, patients who are successfully detoxing very often undergo the same set of symptoms as someone whose cancer is overtaking their systems. The fact that his bilirubin count had come down, against all expectations of his oncologist, gave us hope that the detox was doing something positive for him.

So we were working with two competing narratives. The one from the oncologists, which said that Harry was dying. And the one from the naturopathic doctor, who said that while, yes, Harry was very sick, he was also detoxing and the symptoms we were seeing, including the vomiting of the vile black substance was also a part of detox. I think we partially believed both narratives and so our only recourse was to simply stay positive, have hope and continue to believe that Harry could beat this cancer. Some way, some how, he could do it.

For about the last week of his life, Harry slept on and off pretty much most of the time, day and night. Henry and I simply took turns, 24 hours a day, every day, holding him. I can't remember exactly when, but in his last weeks he had started sleeping with us. It was gradual. It just got more and more difficult to, first get him to settle at 11:00 pm when he woke to nurse and then even to get him to sleep. So we just adapted by keeping him with us always. We would take turns sleeping really. He lay between us and he would cuddle with me for an hour or so, sleeping fitfully and they roll over, really throw himself onto his dad's neck - just cuddle in with all his little might, into his dad's arms and chest. He'd sleep with his Dad for an hour and then switch back to cuddling we me.

We know that, in those moments, he was telling us just how much he loved us. It was in the way he almost threw himself between the two of us, as if he couldn't bear to not be touching one of us for even a moment. He would especially wrap himself around Henry's neck, his arms, almost his whole upper body, wrapped like a wee scarf around his Dad's neck, to just be as close as he could possibly get to his Dad.

And I can still see him, sitting up in bed between us, silhouetted in the night shadows, doing his baby sign for milk in the middle of the night. He was such a little sweetie, he would first tap his chest to ask "please" and then ask for "milk". I nursed him his whole life, right up until the last hour before he passed over.

It was also, I think, thought I am not 100% sure if it was today or the day before, but I think it was today, because it was during the day and Lydia was not at home, that Harry gave Henry one of the biggest gifts he could give.

Harry could do a number of baby signs - "please" " thank you" "all done" "more" "milk" "where is?" "light" "hello / bye-bye", but he only ever said three words.

He started saying "Mum" quite early - at about 8 months. I wasn't sure if that was really what he was saying. I remember when he first started to crawl at 8 months. He would follow me around the house and say, "Mum-mum-mum". I was never sure, was he babbling? Just saying, "source of milk get back here"? Or was he really saying Mum? But he kept it up and later, it was apparent that he was indeed saying Mum to mean me.

The second word he said was not so much one word, as a catch all phrase for what he wanted - "dat dat dat". Harry was a great 'pointer'. From somewhere around 13 months old he started pointing to everything he wanted and saying "dat dat dat" - always leaving it up to us to guess exactly what "dat dat dat" was and pointing and saying "dat dat dat" more insistently until we picked up what ever thing it was he wanted. For example, often he'd point to a whole pile of toys and say, "dat dat dat" and get really indignant when we didn't figure out right away, which toy he was precisely pointing to - it was obvious in his mind!

His third and final word, was his last gift to his Dad. I am sure he gave it to Henry a year ago today.

I was sitting on the couch holding Harry and Henry came into the living room, ready to take over for a turn holding Harry.

That one and only time, I could just feel Harry work up all of his strength, and he reached up his arms from his spot sitting in my lap, up to Henry's waiting arms and, mustering every ounce of his wee strength, Harry very, very, distinctively said, "Papa".

It took so much effort for him to say it, to have the energy to say it. It came out with such force, but it was so clear, "Papa".

I remember Henry and I were both stunned. We both said at the same time, "Did you hear that? Did he just say Papa?"

He was only able to say it once. But I know he so clearly wanted Henry to know that he knew just exactly who he was and how special he was to him. He knew Henry was his "Papa".